PS03 Dermatologist perspectives on topical steroid withdrawal: distrust, disinformation and distance?
Authors: Jonathan Guckian, Olivia Hughes, Yasmin Nikookam, Ria Nair, Jeremy Brown, Anthony Bewley, Faheem Latheef
Journal: British Journal of Dermatology (2023)

Abstract Topical steroid withdrawal (TSW) has become a polarizing phenomenon. The TSW has been described as ‘intense erythema and burning…more prolonged than can be explained by the rebound vasodilation that occurs after discontinuing topical steroids’ (Cotter C, Burton T, Proctor A et al. Topical steroid withdrawal syndrome: time to bridge the gap. Br J Dermatol 2022; 187:780–1). However, TSW acceptance and consensus around diagnosis have proven elusive among dermatologists. This contrasts with a growing patient movement online, with &amp;gt; 572 million views of #topicalsteroidwithdrawal on TikTok. Disparities between patient and clinician acceptance have care implications, relating to psychological wellbeing and engagement with services (Scott S, Deary I, Pelosi AJ. General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ 1995; 310:508). Self-reported diagnosis of previous emergent, ‘unexplained’ conditions like myalgic encephalomyelitis led to negative clinician attitudes regarding patient concordance, potentially leading to worse outcomes and psychological burden. This study aimed to clarify dermatologist perspectives regarding TSW and assess attitudes toward self-diagnosis. A two-part online questionnaire was developed and disseminated to UK-based dermatology consultants, registrars and fellows via social media and email. Section one presented a TSW clinical scenario and randomized respondents into two groups, one mentioning self-diagnosis of TSW and an otherwise identical control without self-diagnosis. Questions focused on attitudes regarding patient predicted behaviours. Section two asked perspectives on TSW as an entity and management experiences. Comparative data were analysed via SPSS (IBM, Armonk, NY, USA) using statistical tests. In total, 103 responses were received, including those from 51 consultants and 38 registrars. Thirty-four per cent of respondents considered TSW to be a distinct clinical entity, 17.5% did not and 48.5% were unsure. The cohort had seen at least 599 patients presenting with a self-diagnosis of TSW but made the diagnosis itself 157 times. Eighty-two per cent linked the diagnosis to social media and 96.1% most associated TSW with eczema. Eighteen per cent felt their patients with TSW were receiving adequate care. There were statistically significant differences whereby respondents felt patients self-diagnosing with TSW were less likely to comply with treatment (P = 0.003), were more likely to take up one’s time (P = 0.001), would pose difficult management problems (P ≤ 0.001) and would be less desirable on clinic lists compared with controls not mentioning TSW (P ≤ 0.001). Qualitative themes included inappropriate topical steroid use, patient mistrust and desire for further research. Many dermatologists encounter patients presenting with TSW self-diagnoses, but uncertainty regarding its validity is common. Clinicians see this phenomenon as strongly linked to eczema and as being driven by social media. Patients self-diagnosing with TSW were more likely to be viewed negatively in terms of treatment concordance and difficulty with management. A minority of dermatologists believe their patients with TSW are receiving adequate care. Further research is essential to achieve consensus and support patients.